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The gap between a patent and a proven treatment

Started 4 January 2025 · 23 replies · 257 hearts · read 2.3k times

BunnyWeston-super-Mare, UK · 4 January 2025
1.5 years ago

The gap between a patent and a proven treatment — putting it in its own thread so it does not get lost in the check-in.

I have read the paper and I am not sure I have understood it.

What I would find most useful is not advice. It is somebody describing what their version of this was, and how long it went on for.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

Sorry for the length. If anyone has been here, I would very much like to hear it.

86

AbramAmsterdam, NL
#1

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

9me too 4

FlossieShrewsbury, UK
#2

Yes to the burping. It is real, it is unbeautiful, and it does settle.

11

SunilFacilitatorBirmingham, UK
#3

the reply above — yes, and the bit that took me longest to accept was the next part.

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

18

TobinCork, IE
#4

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

13

IdrisCardiff, UK
#5

Gently disagreeing with the reply above, or rather adding the other half of it.

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

8

PolaGdańsk, PL
#6

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

10me too 7

MableBolton, UK
#7

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

6

MorayElgin, UK
#8

What the reply above described happened to me too, in a slightly different order.

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

13

IvorLlanelli, UK
#9

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

9

TamarPlymouth, UK
#10

Building on what the reply above wrote rather than answering the original question.

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

10

WellsChester, UK
#11

Building on what the reply above wrote rather than answering the original question.

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

12me too 4

FabianBasel, CH
#12

Please do not read the comments under news articles about this. I lost a fortnight to that.

8

TacitaRome, IT
#13

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

13

BunnyWeston-super-Mare, UK
#14

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

11

AbramAmsterdam, NL
#15

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

10

FlossieShrewsbury, UK
#16

the reply above said something I want to sit with for a second.

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

8me too 9

NevGrimsby, UK
#17

Reading the reply above, I recognised more of that than I expected to.

What helped was lowering my own expectations of the week rather than trying to hold the week together.

12

TobinCork, IE
#18

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

10

IdrisCardiff, UK
#19

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

10

PolaGdańsk, PL
#20

Gently disagreeing with the reply above, or rather adding the other half of it.

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

16

MableBolton, UK
#21

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

9

SunilFacilitatorBirmingham, UK
#22

I will leave this open for a few more days and then add it to the circle's resources, because the answers here are better than anything I would have written.

23

IvorLlanelli, UK
#23

the reply above — yes, and the bit that took me longest to accept was the next part.

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

8